Systematic ethnography of school-age children with bleeding disorders and other chronic illnesses: exploring children's perceptions of partnership roles in family-centred care of their chronic illness

Purpose In this qualitative study, school-age children between 7 and 11 years, living with a bleeding disorder or other chronic illness, defined how they understand their partnership role in family-centred care (FCC), and recommended FCC strategies. Methods This systematic ethnography had three phases: unstructured interviews explored how children understood FCC partnership roles (phase I); document review provided FCC institutional context (phase II); and validation interviews generated FCC partnership recommendations (phase III). This study took place within the area served by a Western Canadian children's hospital. Interviews were held at the hospital or children's home. In phase I, purposive sampling was used to recruit children receiving outpatient care for a bleeding disorder (n= 4) or another chronic illness (n= 4). In phase II, policies and legislation were compared with how children understand their FCC partnership role. In phase III, validation interviews were conducted with children (n= 3) to confirm domains and generate FCC supporting strategies. Data collection and analysis were based on domain analysis and qualitative ethnographic content analysis. Results Phase I outcomes included seven domains regarding how children understood their role as partners in FCC: my best interests, virtues, talking and listening, being involved, knowing, making decisions and being connected. Phase II outcomes revealed how these domains were represented in institutional contexts. Phase III outcomes confirmed domains and generated key strategies to support children's role as FCC partners through graphic representation of FCC as a treasure map, interactive workshop and online game. Conclusions School-age children, living with a bleeding disorder or other chronic illness, similarly want to learn how to be FCC partners by developing competence as healthcare team members, identifying their own best interests, learning how to communicate with 'grown-ups', clarifying roles and goals, and guided opportunities for decision making. Facilitating school-age children's FCC partnership roles is worthy to explore in youth transition programmes.     

‘The thing is not knowing’: patients' perspectives on surveillance of an indeterminate pulmonary nodule

Background

The hundreds of thousands of patients found to have a potentially malignant pulmonary nodule each year are faced with tremendous uncertainty regarding what the nodule is and how it should be evaluated.

Objective

To explore patients’ responses to the detection and evaluation of a pulmonary nodule.

Design

Qualitative study based on four focus‐group discussions. We performed inductive analysis using principles of grounded theory to identify themes relating to responses to the nodule and strategies to manage uncertainty.

Setting and participants

Twenty‐two patients from two medical centres who were undergoing surveillance for an indeterminate pulmonary nodule.

Results

Patient responses to an indeterminate pulmonary nodule were varied and evolved over time. Although almost all patients reported an initial fear about cancer, subsequent depictions of the nodule diverged into four types defined on two dimensions: cognitive (‘it's cancer’ vs. ‘I don't know what it is’ vs. ‘it's nothing serious’) and emotional (anxiety vs. equanimity). Most eventually accepted that the nodule was unlikely to be malignant; however, some remained anxious, convinced the nodule could turn into cancer at any time and should be aggressively monitored for life. Patients used results of surveillance tests as well as their own strategies (e.g. vigilance for symptoms, information‐seeking, contemplating and controlling modifiable risk factors, avoidance, faith) to manage uncertainty.

Conclusions

Surveillance for a pulmonary nodule can weigh heavily on some patients for months or years. Our findings may help clinicians prepare patients with a newly detected pulmonary nodule for the burden of the prolonged uncertainty of surveillance.     

Patients' perceptions and experiences of patient‐centred care in dietetic consultations

Background

Patient‐centred care (PCC ) is essential to quality healthcare. However, there is a paucity of research on PCC in dietetics, particularly regarding patients' experiences and perspectives of PCC . We aimed to enhance our understanding of PCC in dietetics by exploring patients' perceptions and experiences of PCC in individual dietetic consultations.

Methods

The present study used qualitative methods, situated in a constructivist–interpretivist paradigm. Maximum variation purposive sampling was used to recruit English speaking adult participants who had participated in ≥1 dietetic consultations for nutrition care. Individual semi‐structured interviews explored participants' perceptions and experiences of PCC in dietetic consultations. Data were analysed thematically.

Results

Eleven patients were interviewed between September and November 2016. Four overarching themes emerged: (i) fostering and maintaining caring relationships; (ii) delivering individualised care; (iii) enabling patient involvement; and (iv) taking control of one's own health.

Conclusions

PCC is important to patients. Thus, there is opportunity for dietitians to enhance the care they provide by adopting patient‐centred practices. As the first study of its kind, these findings can inform future dietetic practice, education and research by contributing patients' perspectives of PCC . By understanding patients' unique needs and preferences, dietitians can better align their practice with a patient‐centred approach. Furthermore, these findings are useful for informing future dietetic research and education.

     

The experience of disabled children as inpatients: a structured review and synthesis of qualitative studies reporting the views of children, parents and professionals

Disabled children are a broad group that includes those with complex, special or additional health needs as a result of chronic physical, cognitive, communication or behavioural problems. These children are more frequently admitted to hospital than other children; however, there appears to be relatively little research on their experience as inpatients. The aim of this structured review and synthesis was to integrate findings from qualitative studies reporting the experience of disabled children when they are hospital inpatients. Inclusion criteria were: qualitative studies that focused on the experience of children less than 18 years old, with a chronic health condition or neurodisability, during an inpatient stay. Studies of outpatient episodes or intensive care units were excluded. A systematic search identified relevant abstracts, selected papers were reviewed and data were extracted. The synthesis involved elucidating and integrating common themes. Eight relevant papers were identified; data were gathered from children, parents and staff. Communication between children and staff was a dominant theme and comprised giving the child information about their condition and appropriate involvement of the child/young person in discussions and decision making that affected them. Also important was communication between parents and staff, particularly around the division of care for their child. Other themes included emotions, particularly fears, the ward environment and confidence in staff. The review suggests that disabled children's experience as inpatients is not always optimal. Improving the communication skills of ward staff and providing information to disabled children and their families would improve disabled children's experience when they are inpatients.     

Paediatric spinal fusion surgery and the transition to home‐based care: provider expectations and carer experiences

There are more than 12 million children with special healthcare needs (CSHCNs) in the United States, many of whom require specialised health‐care to treat chronic physical and developmental conditions. This study is a qualitative investigation of programme, surgical and at‐home recovery experiences among CSHCNs and their family carers who participated in a spine surgical care programme at a paediatric hospital in the Western United States. The programme is designed to manage increased surgical risk and the transition of care from hospital to home for children with severe scoliosis undergoing spinal fusion surgery. We conducted 30 semi‐structured in‐depth interviews with 14 surgical team members and 16 family carers of children who had programme evaluations and spinal surgeries in 2006. Data were collected in 2008 and 2009 in hospital or at home locations to gather programme participation feedback from families and inform the adequacy of programme support to families during at‐home recovery. Data were analysed by reflexive team and content analysis methodologies. Results showed the programme was effective at improving preoperative surgical evaluation and helping families to anticipate some aspects of the surgical experience and hospital discharge. However, the impact of spinal fusion surgery and the subsequent transition to home‐based care was profoundly emotional for patients and their carers. Our data indicate that programme providers underestimated the extent of emotional trauma experienced by patients and families, particularly during the at‐home recovery process. The data also suggest meaningful differences in providers' and carers' expectations for surgery. Carers' disappointment with their recovery experiences and the perceived lack of post‐discharge support impacted their interpretations of and perspectives on their surgical experience. Implications of this research for surgical care programmes include the need for assessment and provision of support for physical, social, and emotional burdens experienced by patients and carers at pre‐surgical, surgical and at‐home recovery phases.     

Being we and being me: Exploring the needs of Austrian families with caring children

Children and adolescents with caring responsibilities are an uncontested reality in our society. Most are hidden from public view, and they perform a broad range of caring activities for chronically ill or disabled family members. The research literature has accumulated a comprehensive body of knowledge about young carers’ personal needs. However, knowledge and understanding are limited regarding the needs of young carers’ families. This knowledge can contribute to preventing children and adolescents from assuming inappropriate caring roles. A qualitative research approach was used to investigate the needs of young carers’ families in terms of managing daily caring demands. Nine family interviews were conducted with 34 individuals including 15 young carers during spring/summer 2015 in eastern Austria. Open and axial coding procedures and constant comparison method were used to analyse the data. The findings revealed that young carers’ families need to live in accordance with their inherent family logic. Family logic is generated and maintained via (i) family reciprocity that involves the natural help within the family, (ii) individual developmental space that allows family members to be perceived and act as individuals and (iii) network cooperation that offers formal and informal support and recognition from society in general. The findings contribute to understanding how families with caring children manage the caring demands of their everyday lives. The findings also indicate that formal support for families with young carers should consider the individuality of caring arrangements with respect to the holistic and personal needs and avoid stigmatising families that integrate children into caring.